“How did your mom feel about her dementia?”

Jul 14, 2012   //   by Hank Dunn   //   Comfort Care, Hospice  //  4 Comments

[First published January 11, 2012]

I have just spent the last days at my mom’s bedside, in meetings with physicians, having discussions with hospice nurses, and in dialog with my brother and sister. Mom has been on a downhill slide for seven or eight years . . . probably Alzheimer’s.

Hers was a very normal course of the disease. At first she lost things. She asked the same question every five minutes. She made scores of contributions to bogus “charity” organizations—something she had never done before. She voluntarily, although reluctantly, gave up driving. As these incidents started to repeat themselves, more that once, mom said, “I don’t like what is happening to me.”

Then she had to stop volunteering at the Moffitt Cancer Center . . . a job she loved for 22 years. There were trips to the hospital. During recovery from one such trip she said, “I think it is time to move into the assisted living.” My siblings and I jumped all over that and made the move in a few days.

She got her strength back and took to walking again. Most of the time it was quite harmless. But she did end up at nearby shopping mall once. Worried for her safety we agreed mom needed an alarm device attached to her ankle to keep her from wondering out of the building. If she approached the door an alarm would sound. Very embarrassing for her. She told the assisted living staff after several of the attempted escapes, “I wish I had a gun. I would kill myself.”

Of course, psych evaluations followed each of these outbursts and upon examination mom could not even remember saying such a thing or the embarrassing alarm that led to her despair. She got more depressed. Drank more wine. Lost interest in activities.

So we moved her to be closer to my sister in Boulder, Colorado. We found a great dementia care center where she has lived the last fifteen months. The wanderings ceased to be a problem partly because of the layout of the building and partly because her mobility became so limited. The ruthless disease led to a general decline in her health. After she fell and broke her pelvis in the spring she entered hospice care.

So typical, in my experience, she actually improved after hospice got involved. The dementia moved forward but there was some upturn in her general health. Then it happened as I had expected. She fell and broke her hip. We refused a trip to the emergency room. They brought in a portable x-ray and confirmed the diagnosis. What to do next?

Thousands of elderly folks fall, break a hip, have hip surgery, go through rehab, and walk again. My sister found a story on the internet about a 105-year-old woman who successfully went through this course of treatment and fully recovered. Mom was only 92.

But mom did not have the mental capacity to rehab even if she could survive surgery. Oh . . . and she wasn’t walking unassisted BEFORE the fall. Why the hospital, the surgery, possible infection? For what end? Half of advance dementia patients who receive such surgery are dead in six months or less. My years as a nursing home chaplain taught me anecdotally that a hip fracture was the beginning of the end for most nursing home residents. My suspicions have since been confirmed with the research.

So my sister and I sat with a very competent, no nonsense, physician, Dr. Rogers, to plan out the course of treatment four days after the fracture. He started the conversation with a question. “How did your mother feel about her dementia?” My sister told me later she did not get the point of the question. I was thinking, “This guy is good.” He wanted to know mom’s opinion of her condition before the fall. We told him about “I don’t like what is happening to me,” and “I wish I could kill myself.”

He said, “Okay. Here is what we are going to do.” He looked at the very long med list and said, “We are going to stop all these medications except the morphine and add a drug for anxiety. We will offer her fluids but not force anything on her. Comfort is our goal.” He took mom’s desire to be free from a life with a mind that had been lost as an advance directive for comfort care only. We had no wish to hasten death or cause it. We were just letting things be.

If a patient is not happy with their life before a crisis, why would we think they would want to be saved from death? Death will happen to all of us. And when we are burdened with years of disability, disease, and dementia, why oh why would we want to put off the death we welcome? I can’t tell you the number of patients in the same situation as my mother who are rushed to the hospital and their lives are saved for months or years of ever worsening condition.

I had a patient once at the nursing home whose dementia had advanced to the point where he did not know his wife, wandered the halls, and urinated in the corners. He had a long and proud career in the FBI and was now reduced to living most people’s worst nightmare. I suggested to his wife that she speak with the physician about a “No CPR” order. She reported back to me that when she requested the order, the doctor hesitated and referred to me as the “chaplain of death.”

I was shocked. Here I had done the hard work for him in addressing the emotional and spiritual issues and sent a caregiver to him requesting what, in my view, was a most appropriate order. If this patient could see himself and have a right mind, I am certain, and so was his wife, that he would welcome death. His heart stopping was the only way to be free from the dementia ravaging his mind.

God bless the Dr. Rogerses in this world who start with trying to establish how the patient feels about their condition. If the patient would see death as a welcome release then the treatment plan that allows a natural, timely death to occur would only make sense.

Mom died peacefully eleven days after the hip fracture.

4 Comments

  • I am in total agreement and wish my husband could find the courage to see it that way. He is struggling with a similar situation with his mom… he can’t let go. I admire his determination but she was in constant mental anguish before the hip fracture, and now she has the added physical pain. Rehab is becoming unlikely as she is heavily drugged at the nursing home where she is considered a difficult patient. She is going downhill fast but he refuses to accept that. He wants to take her home, take a family leave of absence, and get her to walk again.

  • Many doctors and family members alike share an attitude that is the result of a culture that denies death as a natural occurrence. It’s unfortunate that elderly, with or without dementia, are given often unrealistic prognoses for invasive procedures that would be risky and debilitating to even young and healthy patients.

    My formerly active mother complained of “vague discomfort, and lack of appetite” that were determined to be symptoms of a very slow growing gall bladder and liver cancer. The doctor spoke of a cure (chemotherapy) that would give her many more years of active life. Instead, the chemo wiped her out from the first treatment, and ultimately hastened her death.

    If I get sick, I hope I don’t listen to those doctors and their greed-for-money motivated promises. Just give me comfort meds, and let me make the best of the time I have left.

  • We are currently contending with a similar situation. My 91 year old mother has dementia and fell (hip fx) at her assisted living memory care unit where she lived with my father only for 5 weeks. This was her second hip fracture in 6 months. This time it required a more serious repair (hip replacement) and now she is in rehab where her dementia has really progressed and it is painful to watch her go downhill so fast. The fact that she came through the first hip repair six months ago after rehab and walked with the aid of a walker, and thrived nicely in a supportive environment, I wonder and worry about this second time around. It seems like this might be just too much for her fragile body to withstand even with her loving nature, spunk and prayers from everyone around her. The ironic thing is that we were told by many doctors at the hospital last year that she had only 5 days to live and she was then transferred to hospice where the care was so unbelievably wonderful, that she became healthier and more lively each day and would spend her days singing for everyone. She was discharged after 7 weeks from hospice – head of her class :-). While I and my family feel blessed to have the “second chance” to spend quality time with my Mom through this past year, she is now once again in a sad state. It is quite the emotional roller coaster.

  • I really needed to read this today. My mom has dementia probably Alzhiemers she has been declining the past several months we had to place her in a Assisted Living memory care unit. She is 83 had the disease probably for the last three yrs with it escalating last year where for her own safety we needed to place her in a home. We had been to two psch behav hosptials to get her meds adjusted over the last year. Mom would go through really manic stages were she would walk constantly not eat or sleep then crash. After a few of these crashes and her having hard times coming back from them and countless hospitalizations it was decided that Hospice should come in. The last two months mom no longer seemed her happy self she was very anxious her manic walking increased her eating and sleeping decreased she fell this last week and fractured her hip. She is about 90 lbs she does not understand what has happened and we needed to get a 24/7 nurse at least for the week. We are on day 2 all they are doing is pumping her up with pain meds to be comfortable she is not eating and we swab her chapped lips she moans when she is in pain and then goes back to sleep when the medication kicks in. I am praying that this is the end of her road only because I know that she is no longer happy and she has been struggling prior to this hip fracuture and as your article stated why do an invasive surgery where she probably would not recover from to live a life i dont think she wants to live anymore. All i can do is pray and hopefully she will go peacefully in the next few days. I just want her at peace as she is not.